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    Old 07-15-2008, 12:28 PM   #1
    Thes
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    elevated liver enzymes

    I am on Rebif 22 for 6 months. Today I had my blood test results today, a liver enzyme called SGPT was 3 times the normal level. Did anyone had a similar problem, does this mean I have to stop or change treatment?

     
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    Old 07-15-2008, 01:56 PM   #2
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    Re: elevated liver enzymes

    Thes, its not abnomral for liver enzymes to spike while on Rebif (or any of the drugs for that matter) however it is BAD if they dont come down...this isnt the first time youve had them tested, is it? With Rebif, they suggest testing every 3 months...you also said youve been on 22mcgs for 6 months- may I ask why? You should have only been on 22 for 8 weeks, then been switched to the full dosage, which is 44 mcg.

    If you have been tested before, and things were normal, then this is probably something unrelated and they'll just watch you for another quarter...but if you have not had your liver tested prior- then you should probably go get it tested again in a month..with Rebif, it is NOT unusual for liver enzymes to spike in the first few months, but to become normal again after a few months..

    Talk to your doctor about it- they usually dont pull you off it immediately, but they will need to know. liver enzymes can be nothing- or something and the only way to tell is to see if they come back down or continue to rise..

    Let us know how you are.
    Nikki
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    Last edited by MSNik; 07-15-2008 at 01:57 PM.

     
    Old 07-15-2008, 02:19 PM   #3
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    Re: elevated liver enzymes

    Your doctor/neuro should be best to advise whether or not to stop your treatment. Like Nikki said, changes like this are not uncommon. It's quite possible that the next testing may show the levels changed again.
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    Old 07-15-2008, 02:48 PM   #4
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    Re: elevated liver enzymes

    I had another blood test 3 months ago, which came out almost normal. But that was only three months after I started Rebif.
    Tomorow I will call my doctor to tell what to do.

    My doctor said I will be ok on Rebif 22, but my MRI in June showed new lesions, is it too soon 5 months time to stop progression?

    Thank you very much for your help, I panicked thinking I had to stop Rebif, but now you made me feel a lot better.

     
    Old 07-15-2008, 02:57 PM   #5
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    Re: elevated liver enzymes

    Thes, I went thru the same thing..at 6 months, my liver enzymes were elevated too...and at 5 months- I had a MAJOR relapse! I thought for sure they would pull me off Rebif..but they didnt, I hung in there and had my liver enzymes tested again in 3 months- they were normal..and had an MRI 6 months into it and it was normal too. Well, normal considering nothing was showing under contrast and they couldnt find any new lesions..

    There is no guarantee that Rebif is EVER going to stop progression,; but I will say this, you are only taking half the recommended dose and you definately need to talk to your doctor about that. If new lesions are showing, youre either not taking the right dosage, or this isnt the right medicine for you. I would start by asking him about taking the full dose- its the same needle and it comes prefilled, just like your 22s do..you wont know the differnce in what you are injecting- but the higher dose will hopefully stop progression. The simple fact that half the dose didnt, doesnt surprise me. There is a reason that they do the 44mcgs...and a reason why it comes in a titration pack (which is what most poeple start on- starting with 14 mcgs, then 22 mcgs, and then 44 mcgs)

    Let us know what he says- but dont panic..if you are adjusting well to the drug, theres no reason to stop it right away, but every reason to watch those enzymes and think about increasing to full dosing recommendations.

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    Old 07-15-2008, 03:58 PM   #6
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    Re: elevated liver enzymes

    Thes, the most important thing I am reading in this thread is talk to your doctor. As far as the dose, if your enzymes are elevated on 22 mcgs it might be a good thing that you were not on the full dose!

    Please, talk to your doctor about all of this. Good luck and let us know what he says!

     
    Old 07-16-2008, 12:14 AM   #7
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    Re: elevated liver enzymes

    Well, I asked both of my doctors, I know that you will say it's good to have only one, but I feel better having two.

    So one said take half the dose of the Rebif 22 ( that's almost nothing) and recheck your blood in a month and if the enzymes are still elevated consider to change to Avonex.

    The other one said continue as before and have your blood rechecked in two weeks and then see how it goes.

    These are quite similar opinions, but I think I will go for the first one.
    I really hope my enzymes go down, because I don'r feel like changing treatment right now.

     
    Old 07-16-2008, 04:14 AM   #8
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    Re: elevated liver enzymes

    Thes, I'm really glad that they're going to recheck you sooner them later! You do NOT want to damage your liver. The only thing that confuses me though is that enzymes aside, since you are showing new lesions, why they would switch you to Avonex. As I understand it, this would essentially be tantamount to taking a weaker dose of Rebif.

    Now mind you, I am not on MS drugs myself so this is not from personal experience, just what I've heard and read. In general, I would like to learn if it ever makes sense to switch from Rebif to Avonex if there is new disease activity. (I do get why this may be in order if it's only related to liver enzymes.) Re: new lesions, I GET that "they say" the drug(s) take a while to kick in -- I guess I just have a hard time buying this after half a year.

     
    Old 07-16-2008, 09:22 AM   #9
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    Re: elevated liver enzymes

    Bearywood,

    I know exactly what you mean, I myself ask the doctor what is the point of changing from Rebif to Avonex, she said something like Avonex is done intravenous and requires less amount to act. But I am not "byuing" that.

    To tell the truth I wanted to start on Copaxone, but now I am not willing to wait another six months for the meds to act. At least Avones is the same substance with Rebif. I think if my enzymes don't come down I will try Avonex.

    My plans are to stabilize the progression of the disease in a year and then stop the meds and rtry to get pregnant.

    I have minor symptoms like temperature reversal and L' Hermitte sign but the MRIs show progression.
    How are you doing without medication do you have new lesions?

     
    Old 07-16-2008, 12:02 PM   #10
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    Re: elevated liver enzymes

    Thes, none of what your doctors are telling you makes sense and Bearygood is right to question it.
    First of all, Avonex and Rebif are the same exact drug...taking only the half dose of Rebif that you are taking, is almost exactly the same amount of drug that Avonex will give you. Avonex is NOT intervenous, but it IS intramuscular- and thus will take LONGER to get into your body then Rebif, which is subcutaneous...

    Furthermore, Liver Enzymes, like I told you before can easily be elevated from either one of the drugs (interferons) and this is NOT unusual- however it is VERY important that you watch them and they even out- 99% of the time, they do regulate on their own but for some very few patients, Interferons are NOT the way to go, thus Copaxone (or being drug free) is the only option.

    The idea of getting pregnant, is going to mean that you are off the drugs completely for 6 months minimum...why not start now? Its just a thought- but you dont have to get pregnant right away, and who knows how long it will take you to conceive? (hopefully, for you- right on schedule- but one never knows)..

    I dont like the answers you got. They dont make sense. The most important thing I read here is that you are still having Lesioins and brain activity- that, initself, is a VERY STRANGE way to look at this...cut down on your Rebif? why? It doesnt make any sense..increase it and watch your liver enzymes every month would make perfect sense- and of course, of they do NOT regulate, getting you off the interferon would be the only way to go.
    FYI rebif is the strongest of all the CRABS as far as progression/lesion prevention go- but only taking 1/2 a dose, and now even less than that- is not going to help your MS at all.

    Question for ya- are either of thes docs MS specialists? Are they familiar with the different drugs out there? Im really questioning that from what you are saying- its not correct info. You can do the research on your own, and definately call MS lifelines (the Rebif company) to ask questions- but this truly upsets me- the info isnt accurate..and no matter what- keeping your Liver Enzymes AND Your MS symtpoms at bay are equally important right now.

    Hugs
    Nikki
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    Old 07-16-2008, 12:50 PM   #11
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    Re: elevated liver enzymes

    I make the exact same thoughts as you, but is is very difficult to make the right decision. What I want to do is continue with Rebif for at least a year. Right now it seems imposible to increase the dose at 44. What I am thinking is continue with the 22 for a couple of weeks, do the blood tests again and if the enzymes contine to go up at first reduce the dose and then consider to continue with Copaxone.

    What I wish more in the world right now is to get pregnant, but I am too afraid to stay off medication right now. My doctors say the first 3 years of the disease are the most critical. Is this true?

    About my doctors, the first one is considered to be a very good MS specialist and she has herself MS.

    One difficult thing about MS except for the symptoms is that I find myself contanlty in front of dillemas. I can't stand it anymore.
    To start medication or not to start. Which one to choose? should I stop it? Should i increase, change it? When to stop it? To get pregnant? To eat this?
    What vitamins to take? It is really very tiring. And the bad thing is nonone can make your own decision? Do you feel the same or am I overacting?

     
    Old 07-16-2008, 01:52 PM   #12
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    Re: elevated liver enzymes

    Hi Thes, you are NOT alone in that dilemma. Trust me. Its an ongoing battle knowing what to do and when.

    I do like that you have a doc with MS herself-thats impressive. And, hopefully,she is your rock thru all this..wish I had someone who could totally relate..

    But I also like your idea of staying on the 22s alittle longer and getting retested. dont play around with the liver thing- but its not unusual for them to be elevated at this stage of the game. Im more concerned that the meds arent working for you, due to the activity you are still experincing..but again- you havent been on this that long- and I had my bad experiences in my first 6 months too...everything turned out fine after that.

    So go for it- do as you said and let us know how the next tests are- and what your doctor decideds to do about it..
    youll get pregnant when the time is right.
    hugs
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    Old 07-16-2008, 01:56 PM   #13
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    Re: elevated liver enzymes

    Thes, I think what you're saying is that you want real answers. There are some to be had and some that are impossible to answer. To clarify, I am not questioning your doctor(s) as much as I am just asking questions. I truly don't understand how a solution to new lesions could be to go from Rebif to Avonex. I do get it if it was only the liver enzymes that were concerning. Perhaps your doctor is right in terms of different mechanisms of the 2 drugs but Nikki is saying that doesn't make sense to her. So in reality, I have the same questions as you. Copaxone DOES work differently and I've seen many people who have done better when they've switched to that from Rebif or Avonex. FYI, there was an interesting article recently about getting a clue as to WHY some meds work better for some people although more research needs to be done.

    I just think that in general, the more we understand it seems to be less daunting.

    Re: your question, I am doing well, thank you. My follow-up MRIs were about 8 months after my dx. No enhanced or new lesions on my brain MRI and my orbital MRI showed improvement. It could be what I'm doing and not doing or it could just be the natural course of my MS. Or dumb luck. It's impossible to actually know -- one of the frustrating things about this disease but I'll take the good results! I'll have another set in December or January.

    Re: your MRI, were there new lesions or was it just that the old ones enhanced? A radiologist told me that lesions will enhance when there is ANY new activity -- which would actually include remyelination (a GOOD thing). I haven't been to a doctor since I heard this so I've yet to check it out with a specialist but if what he said is correct, enhancement is not always a bad thing. That said, I'm not sure (don't think) there is any way to tell the difference via just the MRI.

     
    Old 07-16-2008, 02:15 PM   #14
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    Re: elevated liver enzymes

    Thank you both for your answers.

    In the MRI I had in May , I had clearly 3-5 new lesions , 2 of which were active ( enhancing) and the bad thing is that that I have several lesions in the spinal cord. I had solumedrol for 4 days, and since then I am fine.

    As soon I have more news I let you know.

     
    Old 07-16-2008, 05:04 PM   #15
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    Re: elevated liver enzymes

    Thes, good luck to you. I know it can be confusing -- and overwhelming! My best advice to you is get the answers to the questions you need in order to make the right decisions. Please let us know how you make out when your liver enzymes are tested again and just how you're doing in general.

     
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